Writing To Old Doctors

[kbtoyssni]

Has anyone ever considered or actually written to an old doctor that misdiagnosed you? After eight months gluten-free, I'm starting to realize how sick I was. It came on gradually so I never noticed that I wasn't feeling right. My life has dramatically changed for the better in the last year.

But then I think about all the times in the past that I should have been diagnosed but wasn't. Someone should have figured this out at least six years ago. The one doctor's visit that sticks out in my mind the most is one to a GI. I was throwing up blood so he knocked me out and did a stomach scope looking for ulcers. Didn't find one and told me that it was probably nothing. Why the heck didn't he think to go a little further and look at my probably non-existent villi??? That is his job.

So, the other day I was thinking maybe I should write a letter to all my old doctors who misdiagnosed me. Or shall I say, didn't diagnose me, because most of them said "yeah, we don't really know what's wrong so here's some drugs and come back in six months if you're not better." All of a sudden I'm feeling really sad about all the years I lost to celiac disease, and maybe me writting a letter would give someone else several years of their life back. At the very least, it might be somewhat cathartic for me to write.

It's very strange - I've always been so upbeat and positive about my diagnosis. This is the first time I've felt any anger or denial or regret or any negative feeling relating to celiac.

[wolfie]

I have actually thought about doing that, but haven't. I wasn't as sick as you, though. That GI that did your scope...I can't believe that he didn't do any biopsies from the small intestine while he was down there!

I was told for years that I had IBS. I always brought up that I had the same symptoms and I was always brushed off. I just got used to feeling like cr@p. Now that I am feeling so much better I realize how badly I was really feeling.

[DingoGirl]

Yes, absolutely, and since my struggle for most of my life was in the mental/psychological arena, I am writing to my former shrink and a couple of counselors- my shrink in Monterey was wonderful, a really great doctor - but needs to know about gluten's affects on the brain.

go for it - - - more doctors in this country MUST be educated on this disease - - -I like how WE have to educate THEM!

I'm sorry you're feeling so bad, KB - there are just some days like that. I think that way sometimes, too, how gluten literally stole my mental health and well-being for almost my entire life - as with many of us - but then I think, okay, I found this out at 44 and not 84, AND, I'm grateful that I found out about it, period,, since many never do, and that is so sad. These letters to doctors, sensitively and thoughtfully written, might help.

I strongly feel that in the next few years, Celiac Disease and gluten intolerance is going to gain MUCH more prominence in the media. And, for that to start happening, we have to be very vocal about it, get the word out.

God bless -

[Guest cassidy]

I really have thought about doing this as well. I remember one point about 4 years ago when my gi put me on Zoloft. It didn't help so they kept upping my dose. It didn't help. They did an endoscopy - my 3rd, and a 24 hour ph test and they determined nothing was wrong with me. Apparently all that pain was in my head, but the medicine for my head didn't take away the pain in my stomach.

I think I would have to write two letters. The first woudn't be fit to send. It would be something like why didn't you figure this out? Do you realize how sick I was for years and years and you didn't help me. Probably with lots of words that I can't print.

After that one I may be able to write a letter educating doctors. It is very sad how few doctors understand celiac and are able to diagnose it. I have been educating a lot of people, including many doctors that I deal with in my job and it is so frustrating how few of them understand. Last week I explained things to one doctor and he said - so do you just eat pizza and all sorts of bad stuff like one day a year and just feel bad for a while? Feel bad for 2 weeks and have damage that takes months to heal? No, doctor, I don't cheat, have you been listening to me at all????

One other doctor said he never saw anyone with Celiac in his 25 years of practice. You mean you never saw anyone that you diagnosed correctly? Have any cases of ibs that aren't getting better? We talked more and he actually ordered a test for a very sick woman who was hospitalized.

[floridanative]

I met two GI docs and one homotologist in my journey as to why I had anemia - out of the blue. Along the way I was tested for ovarian and colon cancers. In the end if was the first GI that mentioned Celiac to me on my second visit back to discuss my bloodwork. But he NEVER said it was a Celiac panel he ran or I would have demanded to skip right to the endoscopy. Doc #1 didn't know any current stats on Celiac however so I pressed on for a better educated doc. Doc #2 and #3 were useless and even though #3 got the pleasure of diagnosing me, I had to manipulate him into doing the biopsy since he said I did NOT have Celiac. He thought I was a hypochondriac and if someone was going to make the $1200 for the test it may as well be him. After I got acclimated to my new diet/lifestyle, I wrote all three docs. The first one I did thank for thinking to run the Celiac panel and then I told him how prevalent and misdx'd Celiac disease is and listed helpful websites for future patients he may dx. The letters to the other 2 docs weren't that nice (to say the least) and understandably I never heard from either one of them. But to my surprise within a week of mailing doc #1, I got a letter back from him. He said he was glad I pressed on for the biopsy and mentioned that he told me I needed it after the colonoscopy. Duh - but I could have skipped the colon test doc. He did not thank me for giving him tons of websites to refer other patients to but that did not suprise me. Still I thought it was nice of him to write me back. I'd go back to him for follow up care if his nurse was not the only real life 'nurse Ratchet' I've ever met - lol!

[kbtoyssni]

Ok, maybe I'll do it. I have so many doctors that I'd have to write to: that GI doc, all the doctors that told me I had chronic mono, the ones who diagnosed me with chronic fatigue and fibromyalgia, my gynocologist who never could come up with a reason for me never getting a period. And several shrinks who never figured out the connection between depression, eating issues, and celiac. Oh, and the many orthopedic surgeons who would tell me that there's nothing wrong with my knee so they have no idea why it hurts too badly to even walk. Hmmmm. This could take me a while.

Maybe I'll put something together and post it so if anyone else wants to send it to their former doctors they can.

[mellajane]

Hi I am 29 years old and have been sick since I was 7. Talk about misdiagnosed... I went through the whole anger side of this disease where I now am convinced some Drs. just dont listen. Bitter yes, its like you realize Drs. have actually been poisining us for years no wonder we have never gotten better.My mom still is coping with this herself she feels guilty...Its not her fault she is the only person who knows me best when sick. I self diagnosed myself in January of 2005. Traveling, work, times with my family and friends has never been better. Nobody is worried if when Im going to get sick. I am still struggling with being diagnosed on paper or with biopsys. I am convinced this is what has been wrong my whole life. Its been challenging but worth it. I used to get deathly sick until I stopped eating wheat and gluten. A big misconception is the difference in symptoms from gluten vs wheat. With me it was always nausea and lots of vomitting. (Wheat Allergy)People who tend to have bowl problems (Gluten) there is a differnce. I avoid both... My best advice; research it if this is working for you Stick to it. I am so happy that I finally have a solution to this.Everything makes sense. Letting people know your story and your knowledge of this disease is better than any Dr. will ever do or Accomplish.

Has anyone ever considered or actually written to an old doctor that misdiagnosed you? After eight months gluten-free, I'm starting to realize how sick I was. It came on gradually so I never noticed that I wasn't feeling right. My life has dramatically changed for the better in the last year.

But then I think about all the times in the past that I should have been diagnosed but wasn't. Someone should have figured this out at least six years ago. The one doctor's visit that sticks out in my mind the most is one to a GI. I was throwing up blood so he knocked me out and did a stomach scope looking for ulcers. Didn't find one and told me that it was probably nothing. Why the heck didn't he think to go a little further and look at my probably non-existent villi??? That is his job.

So, the other day I was thinking maybe I should write a letter to all my old doctors who misdiagnosed me. Or shall I say, didn't diagnose me, because most of them said "yeah, we don't really know what's wrong so here's some drugs and come back in six months if you're not better." All of a sudden I'm feeling really sad about all the years I lost to celiac disease, and maybe me writting a letter would give someone else several years of their life back. At the very least, it might be somewhat cathartic for me to write.

It's very strange - I've always been so upbeat and positive about my diagnosis. This is the first time I've felt any anger or denial or regret or any negative feeling relating to celiac.

[BRUMI1968]

I've thought about doing this as well. I wish I had the names of every doctor who told me in my twenties that I had IBS and handed me a sample of metamucil. Arg! My old internist I would no doubt be nicer to, though. I would want doctors to ALWAYS give a celiac panel whenever they're going to diagnose IBS. I mean, these things cost $35 each -- compared to how much that person is going to have to spend in their lifetime with doctors bills...not even to mention misery.

Anyway, I might look up Dr. Newell and send a nice letter to her, checking in, telling her how I am, and mentioning the celiac - something to watch for in her patients.

[jenvan]

Check outthis previous thread--its about educating doctors and I have posted some sample letters for sending to docs on the thread too.

Open Original Shared Link

[Guest Robbin]

I have sooo wanted to send letters to the quacks I've had the misfortune to encounter over the years. I tell myself I have to let it go and get on, but the anger sometimes hits me so hard. So many wasted years. The hardest part was the infertility and hysterectomy that I know now was unnecessary. I hate to be so negative, but my experience with drs. makes me think that the dr. who wrote back to the poster (I forget who, sorry ) was probably just trying to cover his butt in case there was a hint of malpractice. Can you tell I am bitter? Yes, I am trying to get over it and get on with life, but anger creeps in every so often. I've just been gluten-free for six months so maybe in another six months, I will mellow some more . If you do write and get any kind of response, let us know, I will be interested in the response. I just don't have any trust in the medical profession to even waste my time.

[tiredofdoctors]

I didn't write a letter, but I did leave a message with his secretary . . . . . "I found out what the root of my trouble was . . . I have blah blah blah (too many to mention now) . . . . thank you for not helping me." It was to the doctor at the Mayo Clinic.

[chrissy]

remember that alot of docs learned for years that celiac was a rare disease and probably didn't know too much about it anyway------so most of them were probably doing the best they could. i thnk that a nice, informative letter explaining what you have learned could be really helpful to some doctors. write it in a way that sounds like you are greatful that they tried to help you and that you understand this disease has been very misunderstood-----make it sound like you are hoping to help others who might come to them with a "mystery diagnosis".

[Cornhusker]

remember that alot of docs learned for years that celiac was a rare disease and probably didn't know too much about it anyway------so most of them were probably doing the best they could. i thnk that a nice, informative letter explaining what you have learned could be really helpful to some doctors. write it in a way that sounds like you are greatful that they tried to help you and that you understand this disease has been very misunderstood-----make it sound like you are hoping to help others who might come to them with a "mystery diagnosis".

Great post.

[CarlaB]

remember that alot of docs learned for years that celiac was a rare disease and probably didn't know too much about it anyway------so most of them were probably doing the best they could. i thnk that a nice, informative letter explaining what you have learned could be really helpful to some doctors. write it in a way that sounds like you are greatful that they tried to help you and that you understand this disease has been very misunderstood-----make it sound like you are hoping to help others who might come to them with a "mystery diagnosis".

I think this is a better approach, too. People generally ignore criticism, even if it is constructive. Your goal should be to educate them to help others. If it's for another reason, you might write the letter to get it off your mind, then burn it. That way you can write what you really want to write!

All the docs I went to were in emergency rooms ... it was usually a crisis when I bothered going to a doc because I never trusted them since I was a little kid. I have asked for tests from my ob/gyn because I never felt good (remember, I have six kids, so he's the one I saw the most ). I don't think he could have been expected to come up with the diagnosis. I went to him last week and told him the events of the past year -- I had been sick with d last time I had a checkup. He kept nodding his head like I was telling him a story where he already knew the ending. He did some bloodwork as part of my checkup, and seemed to know exactly what to look for -- cbc, thyroid, iron, lipids, and a couple others. So, I don't have the years of misdiagnosis that many of you had since I never thought the docs could find out what was wrong anyway -- in the end, it was my own research and Enterolab. Thank goodness there is a test available without a doc's approval.

[jenvan]

remember that alot of docs learned for years that celiac was a rare disease and probably didn't know too much about it anyway------so most of them were probably doing the best they could. i thnk that a nice, informative letter explaining what you have learned could be really helpful to some doctors. write it in a way that sounds like you are greatful that they tried to help you and that you understand this disease has been very misunderstood-----make it sound like you are hoping to help others who might come to them with a "mystery diagnosis".

That is a good point...simply b/c if we piss a doctor off, that only makes him less likely to want to listen and learn. If you read the letter I posted, I tried to keep a firm, but respectful tone...taking the perspective of 'we need your help," vs. "thanks for nothing a-hole." I'm sure many of us could say the latter...but in the end it is probably not likely to help another get diagnosed!

[angel-jd1]

I sent my doctor a packet of phamplets from the CSA. I actually sent them with my Mom to a dr's apt haha.

-Jessica

[kbtoyssni]

Thanks for the feedback, everyone. I do want to use this as more of an educational thing. I don't really blame my doctors for not figuring it out (although there are two who I think should have figured it out). I never had any of the "classic" symptoms, or at least I never went to the doctor with them. I also went to the doctor with isolated symptoms - I'd go in for my knee pain one visit, fatigue another. I moved around a lot, too, so I never saw the same doctor. I'm not surprised no one made the connection between all of my symptoms and celiac disease. I didn't even make the connection between all my symptoms until going gluten-free.

It's too late for me - I just want to spare other people from the same thing. It's really bothering me to think that there are people out there who can't live their life to the fullest because of something that's so easy to change.

[floridanative]

Well I actually said what I wanted in my letters, but I first wrote scathing versions to make myself feel better. Then I edited the nasty stuff out and included tons of useful info/websites for the docs to refer future patients to. I would say there was an arrogance (I know more than you do about Celiac type) in one letter to the jerk that dx'd me against his will - lol! In his case, I doubt he learned anything or would have with a more positive letter.

In the other letters I was very postive about how great I felt and how there is plenty of great gluten free food out there - since one of the docs told me he hated to tell people to go on the diet since it's so restrictive. Anyway, I think at least two of my docs learned some things from my letters, whether they'd ever admit that or not. Maybe I helped one of their future patients get answers and hopefully the hemo doc won't keep telling people 'women just get anemia' like he did me.

[aggieceliac]

I have brought this idea up to my mom a couple of times. I at first (in anger) wanted to sue all my old doctors. My mom brought up the possibility of me having Celiac to my doctor(who is no longer practicing) almost 10 years ago. All she told my mom was that she read too much. Hmm. I'm thinking it was the doctor who needed to read too much. Anyways. It would be nice to contact old doctors in some way and let them know what's really wrong with me (and probably was wrong with me).

[tiredofdoctors]

After reading your posts, I have to say that I agree with you. This guy, however, was a neurologist at Mayo. I gave him all the research that had been done in the UK about Gluten Intolerance causing neurological conditions only. He told me that he thought I had "conversion disorder" -- when you have symptoms which are there only because you've had a traumatic event. He had me evaluated by their psychiatrist, who said that I DID NOT have conversion disorder. The neurologist DELETED the psychiatrist's evaluation from my records (I requested a copy), and when I called the psychiatrist to ask him if I could get a copy of it, he looked for it on my records -- GONE. He wrote a letter to me, personally, telling me that I did NOT have conversion disorder, and told me to copy it and give it to my physicians. That's why I left the message that I did.

I agree that we need to educate our physicians. I always take new information, new studies to my doctor's appointments and I give it to them . . . they say they'll copy it, and I tell them, "No, I printed it for you." Then we go over it together, because I come up with questions asking what they think of this opinion, etc. It has served me very well. With the exception of this guy . . . . .

Sorry I gave the wrong impression . . . I am a very big advocate of educating physicians. I'm a PT, and we were ALWAYS trying to educate them about different aspects of musculoskeletal dysfunction! Now, I'm the "Gluten Lady"!!!!!